Sunday, June 28, 2009

This weekend we went to Grandma and Grandpa's house. We went to the Smithsonian and the American History Museum. E's favorite part was the "bugs" (insect zoo).

On the way there, she walked through the bones exhibit--not too bad! She has been doing very well walking 10+ feet while having to navigate around people (including stop/start, 90 degree turns, without falling or holding on to strangers).

BUG PIC

Even though it was late, she did a lot of walking and playing around the interactive children's section of the American History museum, including navigating a room of playing kids and not falling! (No vids or pics though.)

The next day, we took E to a playground. She loves a challenge. Steps are not her favorite, though...

She played with some boys on their "Pirate Ship"--she was the captain!

Abandon ship! I want to take this same pic in another year or two...maybe E can climb out of there like those two boys. Right now it's just a dream...a cute, bittersweet picture.

Up the "Castle Ramp"--it's a ramp with little wooden planks (not steps, more like a texturized ramp).

My FAVORITE!! E walks on PEBBLES! This was the 4th time. The first two were better (10+ steps, no falling) but I did get this one on video.

There were also other great opportunities--web ladder, suspended balance beam, rope bridge--but I was on assisting duty so I don't have footage. Overall though, E does well with heavy assistance on a playground like this. It's very challenging for her, and she has a great time!

Emily worked on external knee rotation in several different positions. First, half-kneel, with the emphasis on rotating the right knee outwards.

Afterwards, when asked to stand up, knee stayed out MUCH BETTER!

Then the Superknee drill, making sure to alternate leg extention (otherwise, she'd always choose the left).

This was our last post-op physical therapy session with Emily. She is a really fantastic therapist. Our plan was to double up with Emily and our regular PT (Theresa) until we came to a post-SDR "endpoint". INSERT GOAL LIST HERE. We'll continue with the same frequency of PT/week, but as of July we'll stay in our base location. Emily brought in a cake for E to decorate, she called it her "graduation cake". E had to find the icing decorating tips by doing squats. We have a long way to go with standing up from squatting, as can be seen here.

Monday, June 22, 2009

It was such a gorgeous summer day yesterday (Father's day)! E and Viv got to play outside. I wish E could be outside more, but it is so draining to supervise her on such tough terrain (grass, uneven surfaces, steps, etc). We are trying to get her to be as independent as possible...cue loftstrands!

Not too bad! Note the weight-bearing preference on the left. Still, at least she's getting it.

E is in a community dance class. Before enrolling her in the class, I made sure the administration and the teacher knew E was different. SW is her "shadow", to help E move around the best she can. The other kids in the class are between 3 and 5 years of age. It's nice to see that E's attention span is just like the other students, even though her motor skills are not.

I'm sure it's a little intimidating for the teacher, having a special needs kid in the class...but E enjoys it, and she tries to involve E as best she can. The other kids/parents have asked about Elena, and I try my best to field the questions as they come.

Here is E, SW, and the teacher doing their dance move.

And Mommy and E doing some big steps during a Dance Break (where the kids get some "freestyle time", which they are DYING to do, since most of them are wearing little tutus and just want to twirl and jump in front of the mirror). I get off work to arrive just before the class gets out. Note E makes a nice big step with the left, but not with the right. We're trying, though!

At PT last week, E worked on walking while trying to really bear weight on her right leg (she prefers the left). Her weight-bearing on the left is more evident as she uses her loftstrands more often.

Here is E using the balance board at PT. This is a smaller board than the one used with Emily, so it is harder for her.

E's AFOs got some tweaks at the orthotist this week (or was it last week? I forget). DETAIL THIS LATER. Basically the orthotist is allowing her right brace to "point" down a little. She has a small heel lift inside the shoe. So while her foot points just a little, it's still "flat" in the brace. Almost like a regular person wearing high heels--your foot points, but it's still flat in the shoe, and your leg is straight while you walk.

At PT last week, Emily tried using some sort of squeaky shoe, where when pressure is on the heel, they make sound. I have heard of these for "soccer training"--called Kickspots, but I believe these noisemakers are actually in the shoe. Kickspots can be strapped outside footwear, but I think they might be a little big for her right now. I'm inspired by the squeaking though...maybe I can find some sort of sticker that makes noise or something.

Anyway, here's a shot of the shoe--when E is holding on to something, she can put her feet pretty flat. When she walks, though, keeping her heels down (sans braces) is a labored effort.

Here is E trying to make them squeak--she eventually does it, with both feet!

Wednesday, June 10, 2009

I knew there would come a day when we'd think..."remember when she couldn't talk? WHAT A DISTANT MEMORY"!

Yeah. E is quite vocal...so much so, that almost nightly, she blows up about something. She is four years old. Tonight it was that she wanted to use the hairdryer. She NEVER uses the hairdryer! She'll cry/scream for 20-30 minutes, which means by the time she's calmed down and actually asleep, it's up to an hour past her bedtime.

E is also all about the word "no"--even when she means yes. EVERY PHRASE STARTS WITH NO. Where does that come from?

She doesn't hit or bite. She rarely throws things. She does scream her head off, and then revisit the subject of said crying/screaming 30 minutes later and can start it all over again. Jason and I think she's so vocal with her tantrums b/c her physical mobility is limited (no kicking, or running, although she will bang on her door if we shut it b/c she is screaming).

I'm ready for the (almost) nightly tantrums to end...just in time for the little sister to start them, no?

Today's session was mainly about balance. WOW I can say E has DEFINITELY improved!

We started off with an "obstacle course", involving stairs, ramps, one big stool, kicking, and then a balance board. E needs help on inclines/declines when trying to walk independently, but has made progress doing these with her loftstrands (not shown).

Here is E trying to kick with the right foot. For her, this is a pretty good attempt. Still working on extension below the knee--there has definitely been some improvement (she's not dragging, for instance).

Better balance board action! She also take a big step at the end of the video (really trying to use those hip flexors)--note the knee coming AROUND rather than UP. We're trying to have her realize the difference. So far, it hasn't worked.

Next up was the Yoga challenge, where E picked a bunch of poses from different cards. Her shoes were off. Standing poses or poses where her arms needed to be in the air were either done sitting down, or sitting on a balance ball, or standing. She is definitely getting better at extending her arms fully, trying to keep her legs straight when standing, and trying to keep her knees out while bending (not shown).

Next was the Therapy Trail. This is a little trail outside where there are different surfaces to walk on--wood slats, slate, gravel, sand, cobblestone. E used her loftstrands while hunting for little farm animals I "hid" along the trail.

At the end, Emily tried to see if E could walk with only one crutch. We'd never tried that before. E did okay--she wasn't comfortable with it, but tried it for about 10 steps.

Saturday, June 6, 2009

Right before school got out, our main PT suggested I find summer placement for E. I could barely function--I was up to my multitasking LIMIT, I couldn't think about putting E in summer school. Besides...I wanted her summer to feel "different" than the school year (even though she had a GREAT time at school). I was worried if I got her in a school (vacation Bible school, Summer Day care, Day camp, community classes) she'd have problems with being isolated despite being in a group of people. She wouldn't know the terrain, and the teachers might not be able to see to her needs while there were 20 other toddlers running around. Once, in school, all the kids were drawing at a table before breakfast. Once food was ready, EVERYONE LEFT. The teachers were tending to the kids (they did need to eat), but E was left there--b/c she couldn't get out of her chair by herself (the table was very high, and the chair didn't have a step at the bottom. I was heartbroken. Granted, the teachers were very in tune with E, and she was happy coloring, and she did get to the breakfast table later. But what would happen with a room with less teachers per student--and those teachers NOT having any experience with special needs?

E's PT suggested a "shadow". Someone who would be there for E physically, while giving her the best opportunity to interact with her peers. Great idea! Now I had to FIND ONE! Oh, and find activities.

After some searching, I was directed to a very nice junior in high school. She came over to meet E--E was DELIGHTED--and SW started learning pretty quick how E moves/falls/etc. There wasn't that much time to prep SW before E's courses started--I picked a Music and Movement class and a beginning Ballet/Tap class (E LOVES girly-dancy-tutu wearing activities). (I could have picked some more artsy-sit-down classes, but we do enough art at home.) I had checked with the program director and warned the teachers of our situation prior to the class. So far, so good. No major falls!

In addition to the classes, SW helps E at the local library twice a week for fun activities, and this week also took her to the pool. I confess, I'm a little jealous-but this seems to be a very good situation--I get to work, E gets to play, and E's little sister Vivian gets some attention too. It's a little heavy on the wallet, though.

At private PT last week, Elena did some walking and some scooter pushing. She's done this before, but it's obvious from the videos she's getting better at working a kick-scooter.

Here is the start of PT--Elena trying to independently go from standing to sitting on the floor surface behind her. She fell here, but she's done better previously (hasn't fallen all the way backwards).

She also is working on walking backwards. She can do it when she is holding onto something, but not if her hands are free.

Scooter pushing--she does pretty well when pushing with her right foot (weight on her dominant leg). Pushing with her left foot isn't so good.

Thursday, June 4, 2009

I've been perusing the internet for new, constructive ways to challenge Elena physically. I mean--everything is a challenge, but I need to "keep it fresh" in order to keep Elena motivated. I think, this summer, my ideas need to revolve around getting out of Elena's "comfort zone" (and my own). Meaning, more activities on grass. Hills. Climbing. Water. Getting messy. I think my husband and I spend most of our constructive time with Elena working on making everyday activities fun--like walking around the house (hide and seek), steps (foot race), cooking, undressing/dressing, treadmill, stretches, etc. She is getting BORED.

Cue Emily at PT this week--getting Elena to climb up a rope ladder. This is challenging for the able-bodied; it's certainly not the first thing I'd get Elena to try to do. But, voila! A lot of assistance, but Elena definitely got better at it by the end of the session. She was pretty excited and willing to try, but got scared, got frustrated, and then got adventurous and had a good time!

She would collect cards at the top of the ladder, throw them to the floor, then descend and squat in "Frog Pose" to match the cards to a placard (Goodnight Moon matching game). She even held the squat unassisted (first time ever!)!

For placards placed far away, we had her do her "downward dog" or her "walk the dog" (downward dog with alternating weight shifts) to match the cards.

Today marked the last day of Elena's first year of pre-K. It has been AWESOME. She has made some incredible progress this year, and the staff at Stone Robinson for the Bright Stars program are amazing.

When we first started the program, Elena had just started using words in a sentence. She had to take one word for each breath. She had problems pronouncing nearly half the sounds of the alphabet. She's now a complete chatterbox, and has very little pronunciation difficulty. She loves singing and even makes up songs herself.

Before pre-K, Elena did not have the opportunity to interact with her peers. Now she looks forward to playing with friends, and loves games, dress-up, and other peer activities. She is quite social.

Before school, the only place Elena was comfortable getting around independently was one floor in our home. She now readily will try to walk on any flat surface, regardless of terrain (carpet, hardwood, cement, etc.) and will use her crutches with contact guarding.

Here is a clip of Elena and some of her classmates (they couldn't all fit in the camera view) singing the first of three songs at the end of the year Bright Stars Party. She can be a little shy, at first (she did better during the second song, not filmed). She also is quite tired (it was nearly 800pm) and both of her feet needed to be readjusted in her braces. She is also one year younger than her classmates. The differences between Elena and her classmates are obvious. But, for the first time--SO ARE THE SIMILARITIES.

Words cannot express how thankful we are for being included in the Bright Stars program. THANK YOU Geisha, Ruth, Sherry, Maureen, Cathy, Ariel, Ms. Higgins, Neil, the rest of the Stone Robinson Staff, E's reading buddies, the Jumpstart volunteers--and to her classmates, who treated Elena just like a normal kid.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.